What is in a name?

Chris Hatton’s fascinating post here about change (or not) in the number of in-patient beds for people with learning disabilities, concluded that there were almost as many beds as pre Winterbourne View, but some providers had changed the names of their institutions to care homes, with or without nursing, for example. It started me thinking about the role played by language in talking about the difficult topic that is learning disability.

I have spent more time than I care to remember in discussions about the right language to use. If we had spent as much time discussing things that really matter, like how to change people’s attitudes, or how to secure a better life for people with learning difficulties, maybe we’d have made better use of our time. This is a group of people whose labels have changed with alarming rapidity. The table illustrates the plethora of terms used over the past century or so. Many are now terms of abuse, but in their day they were the pukka words to use.

Label

Dates in use (in England unless otherwise stated)

Origin

Mongol

1862 – 1950s

Dr John Langdon Down identified Downs Syndrome, and classified people with DS as a ‘Mongolian’ type of ‘idiot’

Defective

1880-1959

Cross Commission 1886

1913 Mental Deficiency Act (repealed in 1959)

Idiot

1880 – 1959

Idiots Act (1886)

Mental Deficiency Act 1913

Imbecile

1913-1959

MD Act 1913 – 1959

Feeble-minded

1913-1959

MD Act 1913-1959

Moral Defective

1913 – 1930s

MD Act 1913, dropped out of use in 1930s

Dull

First recorded c. 1886

Moron

Early C20

A medical term denoting an adult with a mental age of about 8–12): from Greek mōron, neuter of mōros ‘foolish’.

Cretin

Eighteenth century

Refers to medical condition (due to thyroid deficiency) common in some parts of Switzerland

Backward

1880s – 1950s

National Association for Parents of Backward Children, later Mencap 1940s to c.1970

Ineducable

1944 – 1971

1944 Education Act excluded children with IQ below 50 from school

Spastic

In use since eighteenth century, became term of abuse in 1970s

Person with Cerebral Palsy, medical condition, which affects control of limbs

Sub normal / severely Sub normal

1959 – 1971

Mental Health Act 1959

Mentally handicapped

1960s – 1980s

Better Services for the Mentally Handicapped 1971

People with Mental Handicap

1980s

Gradually replaced ‘mentally handicapped’ in 1980s

Special Needs

1978 – today

Warnock Report 1978

People with learning disabilities

1990 – today

Adopted by Government c. 1990, used in ‘Valuing People’ (2001), ‘Valuing People Now’ (2009)

People with learning difficulties

1980s – today

Self advocates’ preferred term

Retarded / Retards

1940s to c.2000

Official term used in USA until replaced by ‘intellectual disability’ in early C21

People with intellectual disabilities

2000 onwards

Australia, NZ, US, Canada, some UK

In thinking about language, I turn to Valerie Sinason. In a book published in 1992, ‘Mental Handicap (sic) and the Human Condition’, Valerie argued that the frequent changes in language is akin to laundering. This laundering serves to mask our discomfort with intellectual impairment, and to distance ourselves from that discomfort. Changing the words enables us to set ourselves apart from our predecessors, to tell ourselves that we know better. She wrote:

Each worker introducing a new term hopes that the new word brings new hope and a new period of historical change. Each time the new word is coined, it is coined honourably … Each such chapter praises itself for a hopeful new term. It is therefore doing a grave disservice to past pioneers to point contemptuously to their chosen term.

(Sinason 1992 p.40)

This insight helped me to develop the argument that I first published in ‘Towards a Good Life’ (Johnson and Walmsley 2010) that each generation repudiates, not only the language but the legislation, the policy and the practices of its predecessor. Thus, almost as fast as we have changed the language, we have lurched from institutions to ‘community care’ – hostels and day centres – to small group homes, to independent living, supported living, and now individual budgets. The previous policy is rejected as completely wrong and indefensible, to be jettisoned in favour of the new panacea. This startling turnover of policy ideas prevents real learning from the past, and falsely promises wholesale change for the better, just by repainting the words on the door. In practice, I would argue, many fundamentals have not changed. Sally Philips’ BBC documentary on Downs Syndrome provided a neat, albeit chilling illustration. Medical staff continue to treat the birth of a child with learning difficulties as a disaster, just as they did in the days families were told to ‘put him away and forget about him’. Mothers are permitted, nay encouraged to abort a foetus if tests show s/he has Downs Syndrome, and abortion is legal until very late in the pregnancy in such circumstances. The easy assumption that all this is OK shows the low value which continues to be placed on people with learning difficulties, despite changing language and changing policy. I could go on to argue the persistence of eugenic ideas when it comes to childbearing and rearing if you are a woman with a learning difficulty, but I will leave that to another cheerful post.